Chronic Fatigue Syndrome

GENERAL INFORMATION:

What is chronic fatigue syndrome? Chronic fatigue (fah-TEEG) syndrome (CFS) is a long-term illness that can be hard to diagnose. It is also called "chronic fatigue and immune-dysfunction syndrome" (CFIDS). The main symptom of CFS is extreme tiredness (fatigue) that may make it hard or impossible to do everyday tasks. Some people with CFS cannot work, and some cannot even get out of bed at times. CFS may also cause many other symptoms. There is no cure for CFS. However, you may decrease some symptoms with treatment and lifestyle changes.

What causes CFS? It is not known what causes CFS. It may be caused by problems with your immune (i-MUN) system. The immune system is the part of your body that fights infection (in-FEK-shun). Some people have their first CFS symptoms after having an infection such as a cold or the flu. Some people have their first CFS symptoms after a very stressful time in their lives. It is likely that more than one thing triggers (starts) CFS. CFS may run in families. It is not thought to be contagious (kon-TAY-jus) (spread through person-to-person contact).

What are the signs and symptoms of CFS? Symptoms of CFS may change from day to day. These symptoms can range from mild to severe (very bad). CFS can start suddenly, or the symptoms may come on slowly. The symptoms may come and go, or stay for months to years. Your symptoms may get worse during the first six months of your illness, and then they may stay about the same. The following are some common signs and symptoms of CFS:

• Fatigue and discomfort:
  
  
  • Abdominal (belly) discomfort or digestive (deye-JES-tiv) problems, such as nausea (upset stomach) or diarrhea (loose BMs). You may also have an increase or decrease in your weight.
    
    
  • Feeling very tired for no reason that you know of, and the feeling does not go away after you rest.
    
    
  • Fatigue that lasts more than 24 hours after exercise or hard activity.
    
    
  • Joint pain. Joints are the places in your body where two bones meet.
    
    
  • Muscle aches or weakness.
    
    
  • Sleeping a lot, or having trouble falling or staying asleep.
  
  
• "Flu-like" symptoms:
  
  
  • Cough that does not go away.
    
    
  • A sore throat or a slight fever.
    
    
  • Soreness in the lymph (limf) nodes of the armpit or neck.
  
  
• Brain, nerve, and mood symptoms:
  
  
  • Feeling dizzy or lightheaded when you go from a lying or sitting position to a standing position.
    
    
  • Headache that is new or is different from your usual headaches.
    
    
  • Mood swings, anxiety, depression (sadness), and irritability.
    
    
  • You may be more sensitive to alcohol and medicines. Noise, light, and certain foods or chemicals may bother you more than before. Your skin may also be more sensitive to touch.
    
    
  • Problems with memory, thinking, and concentrating (staying focused on a task). Some people with CFS call these symptoms "brain fog". These symptoms may be worse during the first one to two hours after you wake up.

How is CFS diagnosed? There is no special test that can be done which will say for sure if you have CFS. It is hard for caregivers to diagnose CFS because many other conditions can have the same symptoms. Deciding for sure that you have CFS can take caregivers a long time. To make a CFS diagnosis, you must have certain symptoms for at least six months. Your caregiver also must rule out other causes of your symptoms. To do this, you may need to have many medical or blood tests. This can be a very stressful time for you. Talk to your caregiver about any questions or concerns you have about your illness.

How long does CFS last? CFS is different for everyone. People with CFS may experience many ups and downs. Some people have periods where their symptoms get better, and other periods where they get worse (relapse). Symptoms may last five years or more. Some people have CFS for the rest of their lives. Other people feel better after a period of months to years, but still have some mild CFS symptoms. There is no way to tell how long your CFS symptoms will last. Following your caregiver's instructions is the best way to increase your chance of feeling better.

What can be done to help me feel better? CFS is an illness that is hard to understand and treat. You may need certain tests to help your caregiver find the best way to decrease your symptoms. These tests may include allergy testing, a sleep study test, and psychological (seye-koh-LA-ji-kul) testing. Your caregiver may suggest some of the following treatments or lifestyle changes to help decrease your CFS symptoms:

• Diet:
  
  
  • Eat healthy foods from all five food groups: fruits, vegetables, meats and fish, breads, and dairy products. Eating healthy foods may help you feel better and have more energy. Cut back on animal fats and high sugar foods and drinks. For example, a baked chicken breast has less animal fat than a fried hamburger. Examples of high sugar foods and drinks include soda pop and candy bars. Avoid alcoholic beverages. You may find that certain foods (such as spicy foods) bother you more than before. If so, you will need to avoid these foods.
    
    
  • Some people with CFS feel bad if they try to be upright (sit or stand). If this is a problem for you, be sure to drink enough water. Have eight (8-ounce) cups of water a day. Your caregiver may also suggest that you eat more salt. Ask your caregiver about diet changes that may be right for you.
  
  
• Medicines:
  
  
  • A variety of medicines may help your symptoms. For example, depression medicine may help your fatigue, headaches, anxiety, and mood. Your caregiver may suggest other medicines for muscle and joint pain, or to help you sleep. You may need to take medicines to help you have more energy. Remember that some medicines may take several weeks before they start helping.
    
    
  • People with CFS are often more sensitive to medicines, and may need much lower doses (amounts) than other people. Work with your caregiver to find the medicines and doses that are right for you. Talk to your caregiver before taking any over-the-counter medicines, herbs, or vitamins. People with CFS also have a higher risk of having a bad reaction to vaccines. Ask your caregiver before getting a flu or pneumonia (noo-MOH-nyah) shot.
  
  
• Pace yourself: It is tempting to do too many activities during times when you feel better. Do not try to get everything done on "good" days. Doing too much can worsen CFS symptoms in the following days. Learn about how much you can do without getting too tired, and pace yourself. Having a regular daily routine may help you avoid doing too much on days you feel better. Do your daily activities when you have the most energy. Accept that you may not be able to do everything that you used to do. It may take time for you to learn what activity levels will not make your CFS symptoms worse.
  
  
• Exercise: Get regular exercise, but decrease your activity if it causes fatigue or other symptoms. You may need to set new goals while you are ill. For example, set a goal of exercising for five minutes instead of your usual 30 minutes. It is best to start slowly and do more as you get stronger. Stop if you get too tired. Exercise can help keep you from losing too much of your strength while you are ill. Ask your caregiver to help you plan the best exercise program for you.
  
  
• Rest: Rest is the most important treatment for CFS. Take naps and change your schedule to fit your energy level. You may need to take five to 10 minute rest periods every hour or more. Try to go to bed and wake up at the same times every day.
  
  
• Joint or muscle aches:
  
  
  • Use heat to help with aches in your joints or muscles. Use a heating pad (turned on low), a hot water bottle, or sit in a warm water bath. Do this for 20 minutes out of every hour, for as long as you need it. Do not sleep on the heating pad or hot water bottle. This can cause a bad burn.
    
    
  • Some people find that ice works better to decrease muscle or joint aches. Put the ice in a plastic bag and cover it with a towel. Place this over the painful area for 20 minutes out of every hour, for as long as you need it. Do not put the ice pack directly on the skin because you can get frostbite.
  
  
• Quit smoking: It is never too late to quit smoking. You are more likely to have a heart attack, lung disease, and cancer if you smoke. CFS symptoms such as tiredness or forgetfulness may make it dangerous for you to handle a lighted cigarette. CFS may also make you more sensitive to the bad effects of tobacco. You will help yourself and those around you by not smoking. Ask your caregiver for more information about how to stop smoking if you are having trouble quitting.
  
  
• Other tips to help you deal with CFS:
  
  
  • Use a diary or calendar to keep track of how you are doing from day to day. Write down your activities, symptoms, and your feelings. This record will help you learn when you have the most energy. You will also be able to follow your progress. Bring this diary with you when seeing your caregiver.
    
    
  • If you are having trouble with your memory, write yourself notes to remind you to do things. Give yourself more time to do activities that need more attention. Setting an alarm clock may help you remember when to exercise, take your medicines, or do other activities.

How can I deal with the stress of having CFS? Having CFS may cause a lot of stress in your life. Stress may make your symptoms worse. Decreasing stress is especially hard for people who have CFS. The following are ways to help you cope:

• Emotional support: Your life may change a lot because of your CFS. You and those close to you may feel scared, depressed, angry, or sad. These are normal feelings. Talk to your caregivers, family, or friends about your feelings. Emotional support is important for you during this time. You may need counseling or special therapy to help you cope. Cognitive (COG-ni-tiv) behavior therapy can teach you how to deal with changes in your relationships and lifestyle. Family therapy can help you and your family members deal with the stress of CFS.
  
  
• Relaxation: Learn new ways to relax and decrease stress, such as deep breathing, meditation (med-i-TAY-shun), or muscle relaxation. Music therapy, hypnosis, or biofeedback may also help. Ask your caregiver for more information about relaxation methods that may be right for you.
  
  
• Support groups and other resources: Some people find it helpful to talk with others who are also living with CFS. Support groups and national organizations can help you learn more about CFS. Ask your caregiver for a support group in your area, or contact the following organizations:
  • Chronic Fatigue and Immune Dysfunction Syndrome Association of America
    P.O. Box 220398
    Charlotte, NC 28222-0398
    Phone: 1-704-365-2343
    Web Address: http://www.cfids.org
    
  • National Chronic Fatigue Syndrome and Fibromyalgia Association
    PO Box 18426
    Kansas City, MO 64133
    Phone: 1-816-313-2000
    Web Address: http://www.ncfsfa.org
    

CARE AGREEMENT:

You have the right to help plan your care. To help with this plan, you must learn about your health condition and how it may be treated. You can then discuss treatment options with your caregivers. Work with them to decide what care may be used to treat you. You always have the right to refuse treatment.

Copyright © 2008 Thomson Healthcare Inc. All rights reserved. Information is for End User's use only and may not be sold, redistributed or otherwise used for commercial purposes.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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